Elderly dad developed psychosis - what are your experiences of treatment plans / diagnosis with this

You need to arrange (along with 'eldest next of kin' for a family welfare meeting with his doctor, nurses etc.) - after next week, when his partner has left.

Find out what plans are in place to arrange care for him and what you can do. Is he left in limbo, waiting for a diagnosis that may not materialise? Everyone should list their questions and note the answers given. Make it very clear what you expect by way of progress.

There is care - then there's control. On a locked ward, behaviour control is a necessary evil. It's really not a good environment for anxiety, either - as I'm sure you've noticed. He won't be accepted into residential care so is likely to remain there until his condition changes - unless you take charge and constantly visit for updates and meetings.

His condition is far beyond what we, as mere readers, can advise you on.
You need expert advice.
So sorry for you and his other family members, it is heartbreaking for you all.
I am surprised that his partner is being so involved as they are not married.
This is contrary to what usually happens,
Do the staff know they are not married?

Hi , yes staff are aware they are not married.
It’s interesting you say this. I’m assuming it’s because eldest next of kin has been involved in the “ big “ decision of him being admitted there.
I think we’re all frustrated that we ( partner and next of kin) have to ask what’s going on and we’re not being proactively told. For instance they switched his antipsychotics and prescribed diazepam without telling us - only knew because partner insisted on seeing nurse ( vs care assistants) and it was then mentioned.
I don’t see how dad could make informed consent to him being changed drug regime? But I’m assuming as no one has POA right now, they’re not obligated to proactively discuss dads medical condition with us? Just telling us if we actually ask the specific question?

Can’t comment on the technical aspects of diagnosis and prescribing but thought to say that 10 weeks on a secure ward isn’t that long a time. I have known patients be sectioned for at least a year. One young person made a full recovery and is able to live a good life and the other person has struggled but is home at the moment.
It’s surprising how the right treatment plan can suddenly slot into place after a bit of trial and error. The Nhs does have very experienced psychiatrists who treat thousands of people and there’s a lot of expertise- if that’s a comfort.

So very sorry to hear of your Father's plight, but this is way beyond the capacity of anyone on social media to advise you about. As you have said, Care Assistants don't have the necessary technical knowledge to advise you either, so focus on speaking to those who are qualified in psychiatric care. You need first hand expert advice, and you won't get it here.

Sorry for this very sad situation but as others have said it really isn’t appropriate for us or anyone outside the medical world to form an opinion
His partner sounds charming leaving him to go overseas when he’s in this state
I d get POA for health as soon as possible maybe you need to get a solicitor involved
(I gave both health and finances to my eldest it didn’t take too long)
Poor Dad he must be terrified, interesting he did have a water infection which can start just this sort of problem.

It's not clear what country you are in? My husband has Posterior Cortical Atrophy (PCA). You can read all about it on the Rare Dementia website . He also has very poor eye sight and for the last month or so has been experiencing a lot of psychotic symptoms. He is a patient at the London UCH hospital for Neurology in Queen square. We are waiting for an appointment to talk to them about whether there is any possible treatment for the psychosis. I will keep in touch with you. Please do investigate the POA immediately with a solicitor.

ronib

Can’t comment on the technical aspects of diagnosis and prescribing but thought to say that 10 weeks on a secure ward isn’t that long a time. I have known patients be sectioned for at least a year. One young person made a full recovery and is able to live a good life and the other person has struggled but is home at the moment.
It’s surprising how the right treatment plan can suddenly slot into place after a bit of trial and error. The Nhs does have very experienced psychiatrists who treat thousands of people and there’s a lot of expertise- if that’s a comfort.

For a very complex condition and given his age and possible dementia alongside psychosis, Ronib is right, and that's from younger people I've known - ie length of time.

They've tried the obvious "first ports of call" treatments, and they haven't worked or worked yet. they will be observing and making notes. Diazapam is a good temporary sedative, and if it helps calm him in his own mind and relieves some of the "horrors" he experiences in his own mind, its better than just leaving it?

I'm just guessing here but it wouldn't surprise me if they are waiting for a very experienced expert psychiatrist for elderly/very complex problems. There is often - not always - a waiting time for someone like them. It's heart breaking I know but he is in the safest place for now. In the meantime they are observing and making notes

The only other thing that occurs as I'm not au fait with POA in emergency situations is that it's easier for them to liase with one person not a number of them acting and making enquiries separately.

I don't know anything about the specific conditions you name, but I do know that some - some - not all - of the drugs treating psychosis have an effect on the heart and may be contra-indicated.

My husband has classic Lewy Body Dementia, diagnosed 3 years ago and your father's symptoms seem wrong for this. Most LBD hallucinations are benign and the patient generally sleeps a lot. LBD has links with Parkinson's disease so shuffling feet, hand tremors etc. LBD can only be suspected - the presence of the Lewy bodies requires a post mortem examination of the brain.
Sorry not to be of more help.

Saxifrage

It's not clear what country you are in? My husband has Posterior Cortical Atrophy (PCA). You can read all about it on the Rare Dementia website . He also has very poor eye sight and for the last month or so has been experiencing a lot of psychotic symptoms. He is a patient at the London UCH hospital for Neurology in Queen square. We are waiting for an appointment to talk to them about whether there is any possible treatment for the psychosis. I will keep in touch with you. Please do investigate the POA immediately with a solicitor.

As he doesn’t have mental capacity we can’t get a LPOA. I know process for that as I have them myself.
Well have to go through court for and office and guardianship- there big fees and annual costs, plus can takes weeks. Hence why I was wanting to know experiences of anyone who’s managed to do this

I’m in England

Dilemma

My husband has classic Lewy Body Dementia, diagnosed 3 years ago and your father's symptoms seem wrong for this. Most LBD hallucinations are benign and the patient generally sleeps a lot. LBD has links with Parkinson's disease so shuffling feet, hand tremors etc. LBD can only be suspected - the presence of the Lewy bodies requires a post mortem examination of the brain.
Sorry not to be of more help.

I’m sorry to hear that. But helpful to know this extreme psychosis doesn’t fit with your dh experience.
Thank you

I don't know anything about this, but short of the long process of POA will Next of Kin be "heard". Someone here might know.

Dartwarb I was allowed to talk to the charge nurse/consultant psychiatrist about relatives without any formal guardianship or legal powers.
I would not seek to interfere with medication but did voice the patient’s concerns over dosage. As it happened, the psychiatrist was right and recovery followed more quickly once the dosage was raised.

Wyllow3

ronib

Can’t comment on the technical aspects of diagnosis and prescribing but thought to say that 10 weeks on a secure ward isn’t that long a time. I have known patients be sectioned for at least a year. One young person made a full recovery and is able to live a good life and the other person has struggled but is home at the moment.
It’s surprising how the right treatment plan can suddenly slot into place after a bit of trial and error. The Nhs does have very experienced psychiatrists who treat thousands of people and there’s a lot of expertise- if that’s a comfort.

For a very complex condition and given his age and possible dementia alongside psychosis, Ronib is right, and that's from younger people I've known - ie length of time.

They've tried the obvious "first ports of call" treatments, and they haven't worked or worked yet. they will be observing and making notes. Diazapam is a good temporary sedative, and if it helps calm him in his own mind and relieves some of the "horrors" he experiences in his own mind, its better than just leaving it?

I'm just guessing here but it wouldn't surprise me if they are waiting for a very experienced expert psychiatrist for elderly/very complex problems. There is often - not always - a waiting time for someone like them. It's heart breaking I know but he is in the safest place for now. In the meantime they are observing and making notes

The only other thing that occurs as I'm not au fait with POA in emergency situations is that it's easier for them to liase with one person not a number of them acting and making enquiries separately.

I don't know anything about the specific conditions you name, but I do know that some - some - not all - of the drugs treating psychosis have an effect on the heart and may be contra-indicated.

That’s interesting-and a question I can get next of kin to ask of the team re expert psychiatrist.
My experience of being carer for ex husband for 20 years is that psychiatrists are very thin on the ground - he only got to see one , once per year for 30 mins . So I imagine if we’re waiting on expert it’ll be a very long time.

The thought of him being a year in this assessment centre is worrying. He is in a tiny , dark room , in middle of a city (he lives in rural area), it’s noisy outside and in, and off course that doesn’t help his delusions. He has no toilet in his room and often doesn’t make it to the bathroom before having an accident. He has small residents lounge and dining area to wander to and that’s it. There’s a tiny garden but he can’t go there by himself and really it’s not big enough to walk properly and full of smokers which he hates around the benches. There’s no occupational type therapies , I’m not even sure care assistance talk to him thst much between our visits. It’s just so alien to him that I can’t see how it’s helping. He’s not allowed any phone, tablet etc (understandable) so is just sitting there with nothing to do. There’s nothing on his walls or room to make it remotely homely.

Dartwarb im not sure your information about POA is correct I did it for mum after she had Alzheimer’s and had no mental capacity and it’s wasn’t long drawn out at all and I believe the court bit was only a signature needed if I remember rightly. Mum was on benefits so it didn’t cost anything I don’t think, certainly not that I can remember, however it was about 12 years ago so it could have changed
Worth a half hours free solicitors consultation I would think (if they still do that !!)

I do hear what people are saying around not commenting on condition itself.
I’m more after people’s experiences of diagnosis processes when their elderly parent is in these assessment centres . And how we should be working with the mental health teams more effectively to support dad.
Plus experience of POA where he doesn’t have mental competence for LPOA .

As his partner will be abroad, could you decide as a family, who is best suited to be official next of kin..ie the person with most medical knowledge.. then ask to be invited to ALL the care meetings where a psychiatrist should be present. This will allow one of you to have consistent input and also to be able to ask questions..

I do know how quickly anti-psychotic drugs work. My mum had delusions of many types for years, accusing us of things we hadn’t done, men following her etc. Eventually she saw a psychiatrist and after one tablet she rang me to tell me it had all been in her head!

I am so sorry you are having this to deal with. It makes us realise we should all have LEAs in place. We did ours last year.

My OH had PD for many years. Following a fall and hip surgery he became psychotic and it was assumed that this was an after effect of the trauma/delirium and would subside. It did not.

No-one ever discovered whether it was LBD, PD or the effect of the PD drugs, but he exhibited similar symptoms to your Father. He had terrifying delusions (he was being cut up and put down the sewer, there was a death machine in the corner of the room and people were being shovelled down it, the nurses were trying to dissolve his skin with special soap etc.) and also sexually inappropriate behaviour.

He was put on anti-psychotics to no avail. His terror and distress continued unabated till he died, which was my choice - I opted for him not to go to hospital for treatment of pneumonia, but to be allowed to drift away to freedom from his terror. I had both PofAs.

I do not think you can set up PofA for health and welfare if the subject does not have mental capacity - and your father sounds as though he would be outside this condition. You can register an existing PofA, but not set up a new one without mental capacity.

You as NOK can request to meet the consultant involved in your father's care. It does not have to be the "elder NOK", even if that is the person named on the PofA (I believe you said finance PofA is in place). You are his daughter and have a right to be involved in his care. Go with a list of questions: can a brain scan be organised now?/what is the rationale of the current drug regime/is it working/is there a clear diagnosis/what is the treatment plan going forward/how is improvement or deterioration being monitored/what is the social plan for the future etc.??

There is no reason why you should be in the dark over any of this. They should be discussing it with you. Go to the top - if you talk to nurses and carers on the ward you will get different messages from each. Communication is a huge problem in hospitals.

Dartwarb you wrote that your father is registered blind so it wouldn’t help him to have decorated walls. The reason why walls are bare is for the patient‘s safety. There’s a suicide risk attached to being an inpatient so extra safety is needed.

Have you contacted any charities for the blind? They might have some ideas on ways of helping with a stay in hospital. MIND is also very good.

dragonfly46

I do know how quickly anti-psychotic drugs work. My mum had delusions of many types for years, accusing us of things we hadn’t done, men following her etc. Eventually she saw a psychiatrist and after one tablet she rang me to tell me it had all been in her head!

I am so sorry you are having this to deal with. It makes us realise we should all have LEAs in place. We did ours last year.

Yes, my experience with my ex was I could 1. Tell within 48 hours he’d missed taking them, and 2. Acted very fast within 3 days when he went into crisis.

Ok, his starting doses were higher, but even at lower dose they had some effect

Dad appears to have no repose at all. He is responded to diazepam I think, but not antipsychotics

I’m sorry to hear about what you are all going through.

Your father can’t grant a power of attorney as he lacks the necessary mental capacity. You may find this about applying for deputyship helpful.

www.gov.uk/become-deputy

Best wishes.

Luckygirl3

My OH had PD for many years. Following a fall and hip surgery he became psychotic and it was assumed that this was an after effect of the trauma/delirium and would subside. It did not.

No-one ever discovered whether it was LBD, PD or the effect of the PD drugs, but he exhibited similar symptoms to your Father. He had terrifying delusions (he was being cut up and put down the sewer, there was a death machine in the corner of the room and people were being shovelled down it, the nurses were trying to dissolve his skin with special soap etc.) and also sexually inappropriate behaviour.

He was put on anti-psychotics to no avail. His terror and distress continued unabated till he died, which was my choice - I opted for him not to go to hospital for treatment of pneumonia, but to be allowed to drift away to freedom from his terror. I had both PofAs.

I do not think you can set up PofA for health and welfare if the subject does not have mental capacity - and your father sounds as though he would be outside this condition. You can register an existing PofA, but not set up a new one without mental capacity.

You as NOK can request to meet the consultant involved in your father's care. It does not have to be the "elder NOK", even if that is the person named on the PofA (I believe you said finance PofA is in place). You are his daughter and have a right to be involved in his care. Go with a list of questions: can a brain scan be organised now?/what is the rationale of the current drug regime/is it working/is there a clear diagnosis/what is the treatment plan going forward/how is improvement or deterioration being monitored/what is the social plan for the future etc.??

There is no reason why you should be in the dark over any of this. They should be discussing it with you. Go to the top - if you talk to nurses and carers on the ward you will get different messages from each. Communication is a huge problem in hospitals.

Jeez, this sounds very familiar. My ex’s schizophrenic delusions and hallucinations were bad enough, it dads are off scale in terms of horror- it’s like he’s in a horror movie with the level of how the “village” (whoever they are) are going to mutilate and torture him . It’s quite horrific enough to listen to , never mind being “in” it.
I suppose I’m not totally surprised they didn’t ever get diagnosis. I know it is a matter of elimination rather than positive diagnosis.
I’m sorry you had to go through this. I had to leave my marriage after 30 years due to safe guarding when my ex refused to take his antipsychotics any more. It was an incredibly hard 20 years of being his carer and took its toll on my mental health too. I hope you have found some peace since his death, and yes, I think pneumonia was the kind way to go. 💐